My mother was diagnosed with PSP in 2021, and in 2022 she fell and broke her hip. After a series of botched operations she was eventually given a 'girdle stones' procedure which essentially removes the hip joint, and discharged from hospital with no support in place at all - not even physio.
My father has had to pack in work and cares for her full time now, she chokes daily on her food (but refuses to be tube fed), and she can't walk at all anymore. She needs her personal care taken care of when she goes to the toilet, and her speech is barely understandable now. She is not far off a vegetative state, where she spends all day sat in her chair.
My dad can't leave the house, ever, for more than an hour, and on one occasion where he did he returned to find her fallen out of her chair with a bloody head. I work away Monday to Friday most weeks and I'm their only child, so I'm never around to help.
I convinced him to apply for Continuing Healthcare (not an easy task as he is a proud man who won't admit he needs help) however, after 9 months of trying to get them to assess and give a verdict, they've finally come back and said she doesn't qualify. (not really sure how much more disabled she could possibly be!)
Does anyone know if there is any other way they can get access to carers? My dad has now got a hernia from lifting and moving her, and he's massively struggling to care for her. He gets carers allowance and she getsa disability benefit, but this is a very low amount of monthly income, and would no way cover the cost of carers coming in. We're really struggling with CHC's decision at the moment (I'm unbelievably angry about it) and do intend to appeal, however surely there are other options?
I'd love to know what avenues others have gone down.
Apologies for the long post, but I felt I needed to explain a bit!
Thanks.
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Neffian
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Sounds like the stage my mum is at. She is falling out of her chair now on a daily basis, needs support to go anywhere.
She also failed CHC at the final assessment although they encouraged us to reapply as she got worse. We shall see.
Fortunately mum lives with us now and we are multigenerational so there is normally someone home - we juggle.
She should have had a 6 week re-enablement package when released from hospital which would have helped you.
I agree with previous post - contact adult social care for an assessment , if they are low income carers will be provided by the council. depending on their level of savings. Assessment will not include house value if care is to be provided in their home.
My Mum’s situation was similar to yours and Dad couldn’t cope at home. After continuous UTI Mum got admitted to hospital and we thought we’d lost her a couple of times. They wanted to discharge her home but I insisted this was not an option without 24 hour care. Social services became involved and it was agreed it wasn’t safe for her or my Dad for her to go home.
They started looking for a nursing home (which Mum didn’t want) but was the best option for them both. They live in a council house so Social Services found one and pay for it. They applied for CHC and were approved for nursing only which basically means the nursing home get more money.
Mum is getting on OK at the home she is safe and someone is there 24 hours. We also have the local palliative care team visit her.
This is just my experience and I appreciate every case is different but do keep being pushy it’s not easy as you are the only child (I am 1 of 4 but it’s still me that has to do everything)!!!
It's appalling that you haven't been awarded CHC. Try contacting an organisation called Care to be Different. And definitely find a profession advocate - ours was the specialist neurological nurse based at our local hospital. Good luck
Dear Neffian,I understand your parents are reluctant to ask for help and "social services" still has a forbidding sound to it for many. Our community matron was great, she told my husband "it's my job to make sure you have access to the care you need" and she underlined that the needs assessment should not depend on who is paying for the care.
So if you can get a care assessment (via adult social services) it should come into place. The CHC vs social care is a separate discussion and shouldn't come in the way of getting appropriate care at home.
Best of luck and thanks for advocating for your parents. 🌻🫂
Hi, my mom was declined CHC because she didn't have a PEG tube fitted. She had access to carers 4 x daily via the local council. She also had an Adult Social worker who looked after her. Maybe reach out to your local neurology hospital department in the area. If she is at home then her GP is ultimately responsible for your mom. Take care, I fully relate to your situation
Hi Neffian, so sorry to read this. Contact adult social care. Get her assigned a social worker. Respite care might be available for your dad at no cost but the social worker can advise. Also the gp-, it may be time for hospice care to be involved, if so they might be able to help you do a fast track that automatically secured the chc funding. My dad failed first time and as we were fighting the decision the hospice as got involved and are now helping to secure some funds to help support his carem any questions please message x
My wife was diagnosed in 2021 with PSP. She has lost all her mobility and speech. I too can't leave the house for more than the odd hour or so. We have two carers visiting three times a day. We too were refused funding.
Social services have provided a specially padded chair on wheels, which she can't fall out of, and a hoist in the bedroom. If you can't afford to pay for carers, my understanding is that social services should provide them.
I used to care for my wife on my own but came to realise that I needed help and now welcome the support provided by the carers.
The GP made a referral to the hospice and the community nurse, who visits every week.
Hi, I’m a PSP sufferer who had a stroke earlier so have deteriorated quite quickly with mobility. I can no longer walk even a few steps without human support. I have an allowance of 35 hours personal care, for which I pay £113/week and the council pays the rest (carers pay is a few quid over £10/hour - don’t know exactly how much though). I have a brilliant Social Worker who arranged this and is looking to get me CHC funding. So, my suggestion is get someone in authority fighting your corner! Best of luck
Hi Neffian - your story is exactly the same as mine as I am an child, I also work away most weeks, Mum was diagnosed 2022 & Dads doing everything and won't ask for help. I feel guilty all of the time that I can't do more to help.
Just last week we visited our hospice team for our 3 monthly review & I asked how we get access to care or at least an assessment.
They were so supportive & have already arranged a visit from the district nurse to assess mums general health as she is losing weight despite eating fairly well & the social care team are coming out to assess her current care needs.
I think as others have said you have to use any contact with health professionals to help get the help your parents need. I just asked the question on Friday & already things are happening which should provide help.
Hi, sadly many of us on here are either direct or indirect victims of a broken care system. This has been one of the most challenging things we have had to contend with which on top of the stress and strain of the cruelness of CBD has been a difficult emotional and stressful journey. We have struggled to get the support of a social worker, there is one in the background somewhere but they don’t really feature. So many stories to tell about our care system experiences I could write a long journal. My biggest bit of advice which has been invaluable for us is to establish a relationship with a local hospice that provide a hospice at home service, this can have many benefits such as to provide drop in visits, be on hand for an emergency and support the CHC process. We are still navigating our way through the process in the hope it goes mums way but it is tough. I did write to our local MP to raise awareness of the CHC process and what we are going through, this was more procedural than anything, a very robotic response but it made me feel a little better at the time for doing it by simply knowing it was read. I am sorry if this is not much help, it’s a very frustrating situation and it’s difficult not to feel angry. It seems as though life savings and the financial support of family is what is relied upon these days when we get seriously ill or elderly and frail. I can’t imagine how it would be for anyone that does not have family or funds to support over and above the basic level of care when very unwell.
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